Facing My Facial Pain

By Kelsey Zachary

I am often asked about my TN journey and my decision to get brain surgery in an attempt to help manage some of my symptoms. Today, I am exactly 1 year post surgery and while it was the most terrifying thing I have ever done in my life and the recovery was long and challenging, I can say without hesitation that I would do it again tomorrow to have even an ounce of the relief I’ve been lucky to experience with my surgery. 

In early 2011, I woke up to the most excruciating pain I had ever experienced radiating from my ear, across my face and into both my upper and lower jaws. The pain lasted for only a few moments and then disappeared. I got up, surprised and in shock and then it happened again. After a few more episodes, I waddled my way across the street to the walk in clinic. I was lucky to see a doctor who had seen me before. He looked at me and my history, I had an attack. I couldn’t talk through it. When I could talk again I said it felt what I imagined being stabbed in the face or shot in the face would feel like. Right away he said, I’m sending you for a neuro consult, you look like Trigeminal Neuralgia. And my relationship with facial nerve pain began. I’ll spare you the details, but the short of it took me three neurologists before I found one who would listen. The first two said I was too young for any surgical intervention and that drugs were the only logical management of my condition. Armed with angst and bitterness toward a medical system that seemed more content on tranquilizing me with drugs that made me chronically nauseated, dizzy, caused me to gain nearly 70lbs in all, and made me lethargic and exhausted no matter how much I slept, I fought to educate myself about TN and all the options, good and bad. 

I connected with a couple of amazing people who took tearful phone calls from me. They had TN, and they armed me with information and courage to keep pushing. It was a result of those interactions and the uncertainty of the medical support I had that I founded the Trigeminal Neuralgia Lantern Walk of Awareness! It gave the pain a positive meaning and allowed me to connect with other people and hopefully spread some awareness about a disorder that is largely unknown and misunderstood in the medical world. A disease that has the nickname of “the suicide disease” because the percentage of those who attempt suicide because of what TN does to their life. And I would be a hypocrite to say it wasn’t something I thought about. The thing about TN is, above and beyond the pain, it changes how you live. You have triggers that can start a series of rolling electric shock attacks or make it feel your face is on fire or that all of your teeth are being drilled into simultaneously. Many from my support group said that giving birth was easier and less painful than a TN attack. Everyone has different triggers, and they can change over time or depending on how you respond to meds but for most of us, there are a lot of triggers. My triggers included, but definitely were not limited to: eating, especially crunchy textures, anything cold, or too hot. Brushing or flossing my teeth, touch, air moving across my face, smiling too much or too big, talking, laughing, sneezing, blowing my nose, yawning, putting on my glasses, brushing my hair, you get the idea. As you can imagine this can make simple daily tasks quite challenging. I often would have to use a straw if I drank any liquids that were a tiny bit cold. I couldn’t go out with friends or family much because I’d survive work and be in agony by time I got home and exhausted from the pain and meds that all I could do was go to bed and hope I could sleep to try and recover from the day. 

Onto my third neurologist, maxed out of almost all of the pharmaceutical options, and on cocktails of drugs that were starting to cause damage to my liver, I was over 6 years into my TN journey and I had enough. It took away my twenties from me, it took away my ability to spend time with friends and family, it took my away my ability to do things like go hiking or spend time doing photography. I felt drugged up and I was still getting attacks daily. I went back to my neurologist and I fought. He said they couldn’t help me because my mri came back “unremarkable” but thanks to my research and talking to people, I knew two things. MRIs are not always an accurate diagnostic tool for TN, they are a ruling out tool to make sure your TN isn’t caused by things like MS or tumours pressing in the nerves but often the smaller vessels and arteries are hard to identify or are missed entirely. And two, I knew you wanted someone who does a lot of the procedures that you are hoping to get done. After being told I was “unstable” when I came in begging for help again, I finally had my surgical referral and the wait began. 6 weeks went by and I got a call from Dr Anthony Kaufmann’s office in Winnipeg. I pushed for him because I knew the wait would be a year as opposed to up to 8 years in Vancouver. Kaufmann also learned the procedure from the man who invented it and has devoted his entire medical career to cranial nerve disorders. On top of that, I had heard only amazing things about him and his team. There was not an arterial compression on my MRI but the surgeon saw some blood vessels that he thought might be contributing to my attacks. They gave me about a 50% chance at the surgery being successful and I was 100% willing to go try and have it not work because it was better than not trying at this point. I was put on a cancellation list but told it would about 12-14 months to have my microvascular decompression (mvd) surgery. Fast forward 9 months and I was starting to experience some weird pain in other parts of my body and blood tests started to show that my liver function was not working properly anymore from all the medications I was on. I called Winnipeg and next thing I knew I had two weeks to organize my trip there, the time off work and help from family to make it all happen. We arrived with a buffer day to set up our air bnb and then it was off for all my presurgery consults and blood work ups. 

My surgeon spent a long time with me, my husband and mom, answering all of our questions. He also expressed some concerns that some of my symptoms were more typical of atypical Trigeminal Neuralgia or atypical facial pain. These were symptoms that surgery would not have a chance of helping and had I been misdiagnosed previously and actually had an acute form of facial pain, surgery could actually make worse. I was informed that in his opinion it was a 50/50 gamble that surgery would help or make it worse. That was a lot to digest after feeling so sure that surgery was what I wanted. I was 100% willing to try it and have it fail but to try it and have it get worse was not an outcome I had previously considered. I know a handful of people who had previously had other surgical procedures done and had it go incredibly wrong and they ended up worse. I had seen their experience first hand and suddenly everything was more terrifying than I could imagine. I was given a few hours to think it over and ask any other questions and I made the decision to move ahead with surgery. One thing I so appreciated is that Dr. Kaufmann gave me the power by telling me I could say yes now and that I had until the moment they put me under to change my mind. 

The next morning came and despite all the butterflies and anxious nerves, I made it to theatre and after a couple of jokes and a few last minute pre-operative checks I was out. Waking up from surgery was not a great feeling! I had some relatively minor complications that required some extra checks and follow up with the hospital gastroenterologist. I’ve never experienced that much nausea in my life but it only took a minute before they knocked me out with some strong pain killers and the next time I woke up, I was in the neuro step unit being quizzed about where I was, what the day was and what was my name etc. I’ve never been a big fan of hospitals but the nurses and Dr. Kaufmann were amazing. I could press a button or squeak out a noise and a nurse would come and adjust my medication or help me through a nauseous patch. FYI - throwing up, coughing and sneezing post brain surgery are NOT FUN! Staples aren’t exactly the most flexible to sudden, jarring movements. They had me up and walking less than 24 hours after surgery and before I knew it I was released back to to the air bnb until my 2nd follow up with the surgeon. 

In a lot of ways recovery was easier than I anticipated, the electric shocks I would get from my TN were basically gone but I wasn’t prepared for just how tired everything would make me and some of the things I’d have to work on mentally to adjust to being “healthy” when I’ve been used to being “sick” for nearly 8 years. 

I took my first shower and then I slept for half the day. I have fibromyalgia and some of the restrictions to help my head heal caused severe painful flares. To help prevent a CSF (cerebrospinal fluid) in the first several weeks you aren’t allowed to bend over. I was home making pasta one day and spilled sauce on the floor…… I ended up throwing wet paper towel at it and then used my foot to tidy it up. I also had to sleep on a wedge for several weeks. That was probably the most uncomfortable I’ve ever been in a bed! It was worth it though. I healed well and within a few months I was starting to get a little bit of energy back and most of the surgical pain was gone. The TN shocks were also still gone. I am left with what feels like a sunburn on the left side of my face and almost a tickling of the skin that almost never goes away but taking away the awful waves of stabbing, piercing nerve pain has been a total game changer for me. 

It’s been a crazy year and I can hardly believe the transformation. I’ve lost a good chunk of the med induced weight gain, I can go for drinks and dinner and come home tired, but without the searing nerve pain that would stab me relentlessly. I’ve slowly learned to be less cautious and anxious over any little twinge I get in my face - my nerves have comfy little Teflon pillows now! It’s been a huge adjustment to feel good. I still live in chronic pain that never stops and I have bad days and get occasional TN shocks on my non surgical side but for now they are few and far between and don’t seem to have regular triggers or come with the same intensity they did on my other side. For now, I’m just going to milk every moment that I can be relatively normal again. And enjoy every day that I am able to feel good. There’s no cure for TN so while I am doing better now, it is my hope that more will become educated and that we will be able to get help more easily in the future. No one should have to experience the kind of pain that TN causes, even my worst enemy.

Amazon to Support The Facial Pain Research Foundation

It takes millions of dollars for scientists to find a cure.  The world-wide support for The Facial Pain Research Foundation’s six research projects to find a cure for trigeminal neuralgia and related neuropathic pain has grown enormously over the last three years.  Corporations, foundations, scientists, medical professionals, celebrities and individuals have donated their time, money and talents to help our international consortium of researchers.  Much of the momentum is the result of friends with neuropathic pain asking their friends to help.  As a result, Amazon has become a helper to our growing team of supporters.  Please think about your friends and how they can also help us and let us know at This email address is being protected from spambots. You need JavaScript enabled to view it.

Amazon wants to help raise money for The Facial Pain Research Foundation through its Amazon Smile Program. It’s as easy as shopping on Amazon.com, in fact that’s exactly what you do. The Facial Pain Research Foundation is now supported by Amazon.com’s Smile program. The Smile program allows a portion of purchases made on Amazon Smile to go directly to The Facial Pain Research Foundation.

When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization.

If you already have an Amazon.com account

Simply type in Smile.Amazon.com on your browser and login

Click ‘Select and Start Shopping’.

In the top menu bar ‘click the down arrow’ to the right of ‘Your Account’, then click ‘Change Your Charity’ in the drop down list and choose The Facial Pain Research Foundation

Characterizing A New Biological Therapy For Treating

Trigeminal Neuralgia

by Robert M. Caudle, Ph.D.

Department of Oral and Maxillofacial Surgery

University of Florida

Trigeminal Neuralgia is a devastating disease that is poorly controlled with current therapies. Tegretol is partially effective in some patients and vascular decompression surgery provides a bit of relief for others.

However, most patients do not find these therapies sufficiently effective because the root cause of Trigeminal Neuralgia is not known. It is difficult to address the underlying etiology with novel therapies.

We, however, have identified neurotransmitter systems on the trigeminal neurons that transmit the pain signals from the face to the brain. The receptors in the neurotransmitter systems offer unique targets for delivering biological agents that alter the function of the neurons. Although this form of therapy does not attack the cause of the disease, we can exploit these receptors to disrupt the transmission of pain to provide relief to the patients.

 We have constructed a novel biological agent that can prevent the transmission of pain signals through trigeminal neurons that express the receptors associated with a specific neurotransmitter system.

Preliminary studies have demonstrated that the agent targets the appropriate neurons and that it retains its biological activity for at least 24 hours following uptake by the neurons. We expect that the agent will be functional for up to three months following administration.

In this project we will be scaling up production of the agent and conducting rodent studies to determine if the agent blocks pain from nerve injury as predicted. We will also evaluate the most appropriate route of administration, the dose, and the duration of action of the agent to optimize the therapy protocol. These studies are expected to provide the basis for initiating human clinical trials to develop this agent as a therapy for Trigeminal Neuralgia.

Note: The Facial Pain Research Foundation’s Board of Trustees is committed to funding Dr. Caudle’s research  project described above.  Start date of the project is June 1, 2019 and the first phase is to be completed within twelve months.

Mervyn Rothstein Interviews

Todd E. Golde, M.D., Ph.D.

Todd E. Golde, M.D., Ph.D., is executive director of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. He oversees neuroscience and neuromedicine research programs across the University of Florida campus. A professor of neuroscience and neurology, Dr. Golde joined the University of Florida faculty in 2009 and became founding director of the university’s Center for Translational Research in Neurodegenerative Disease, which he led until taking charge of the McKnight Brain Institute in December 2016. He is also director of the NIH funded 1Florida Alzheimer’s disease Research Center group of institutions.

An internationally known expert in the scientific understanding of Alzheimer’s disease, Dr. Golde has published more than 240 papers that have been cited more than 30,000 times, (https://scholar.google.com/citations?user=X_9xacsAAAAJ&hl=en), and has expanded his leading-edge research to include other neurodegenerative diseases, cancer and even malaria. He is lead investigator for the Facial Pain Research Foundation’s Gene Therapy Research Project, at the University of Florida, to find the cures for TN. 

 Dr. Golde spoke with Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005.

How and why did you become Involved In the “World” Of Scientific Research?

TG: I’ve loved biology from as far back as I can remember. The real catalyst was when I was in my junior year in college. I didn’t know what I was going to do. I was thinking about going back and teaching at a boarding school for a while before I figured out what I was going to do with my life. But I was a biology major at Amherst College and I took a course with a professor named Richard Goldsby, a wonderful teacher, who was basically teaching a graduate level course to undergraduates. We had to write a term paper, a research-hypothesis type paper, the first time I’d had to do that in college, and the response back was that this was one of the best papers he’d read in many years, undergraduate or graduate. Please come talk to me. I think you might like to do research. 

Your laboratory conducts disease oriented research with specific, but not exclusive focus on neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease. How did you get involved in developing a research project to find a cure for Trigeminal Neuralgia and related neuropathic pain?How did the development of this research project come about, and what motivated you to take on the leadership role?

TG: I make no claims about being a facial pain or trigeminal neuralgia expert. I’m just thinking opportunistically about how we can make a difference. When I came to the University of Florida, I was the founding director of the Center for Translational Research in Neurodegenerative Disease. The chair of the department of neurology at that time had hired somebody named Dr. Andy Ahn. Andy worked on headache and pain, and the director needed a place for him. I had some space at that time, so Andy was a scientific neighbor, and we would have discussions.

The University of Florida is one of the hotbeds in the world in terms of a gene therapy approach based on adeno-associated viral vectors – we call it AAV for short. A former dean actually discovered this virus. One of our senior faculty members participated in creating the first gene therapy vectors around it. My lab had already been using AAV vectors, but we doubled or tripled down when we came to the University of Florida. AAV has a naturally affinity to get into neurons.

So Andy sort of triggered this, but my bandwidth was stretched at that point – it’s still stretched. I kept on tweaking Andy to go down this road. Andy left academics, and at some point I said I should do this.

We felt it could be something that could be rapidly translatable. Finding a cure for trigeminal neuralgia is a huge unmet medical need, but it’s an orphan disease that doesn’t affect enough people to attract a huge amount of attention.

There’s a chance for harm if we get into humans, but the nice thing about working with trigeminal neuralgia is we can at least start our initial studies in humans in people whose next option is surgical ablation of the trigeminal nerve. That means that there’s an out if we actually happen to make people worse. When we do these kinds of trailblazing experiments or envision them in humans, we need to make sure that if something could go wrong we have a way out.

Now we’ll begin the animal phase of study – testing in animals. And I know how much this research can really affect people’s lives. It may not work, but we have everything in place to test it. So let’s try.  

If Gene Therapy isn’t new, why do you believe that it can work to block pain signaling in the nerve? 

TG: It really comes down to technical details. People have used the wrong vectors before that had their own liabilities. I honestly just don’t think people have thought that much about this approach.

Last year, gene therapy had its first really radical major success outside of the eye, which was with children who had a disease called spinal muscular atrophy (SMA). They were treated systemically with a AAV vector – a different flavor of the same thing. These kids basically get spinal motor neuron degeneration when they’re young, by the time they’re two years old, typically, they die. Fifteen children were treated with huge amounts of virus, and reports last October showed that every one of these kids was alive at two years of age. And those with high-dose vectors, many of them were almost asymptomatic. At that age the expected survival rate would have been eight percent. So there are some children walking and living normal lives after gene therapy who otherwise would be most likely dead.

So I think that was a turning point in the field, to say this, AAV-based gene therapies, really will have its place in modern medicine. And that study in SMA was much more heroic and much more challenging than what we envision. So I think the time’s right. We know we can deliver the gene to the nerve. So now it’s just finding the right gene that will dampen pain signaling in that set of neurons, hopefully without doing harm.

Supposing your theory and project is proven successful. What implications or lessons wil this work provide for other researchers?

TG: I think it would say that perhaps the gloves come off on gene therapies for many disorders, especially things that are targeting nerve cell dysfunction. 

Because of the Hippocratic Oath – physician, do no harm – we need an out, so we wouldn’t want to go and do this on intractable sciatic nerve pain. Because what happens if you make them worse – you can’t cut their sciatic nerve without serious implications.

But I think success could open up the door to many different approaches targeting pain. And given the current opioid epidemic, driven from people at least initially taking these medications to treat chronic pain – (whether that’s right or wrong or medically appropriate is another question) – I think this viral approach enables us to deliver the medicine or treatment precisely to the cells or organ or nerve and hopefully avoid the systemic side effects that would come from taking a pill or an antibody or other approaches.

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 LAUGH YOUR FACE OFF April 6, 2019

Raised OVER $560,000

Pat and Amy Tomasulo

by Jody Schwartz

Hi Everyone…

My cousin, Michael Pasternak, is a Founding Trustee of the Facial Pain Research Foundation; so my family and I have attended the LAUGH YOUR FACE OFF (LYFO) event in Chicago for the last five years to show support for finding a cure for Trigeminal Neuralgia and related neuropathic pain. This year I was asked by Dan DiCaro, another FPRF Trustee, to help create the LYFO live auction which had 87 items offered and raised over $57,000.  Winners came from five states and Mexico. So now I am officially a FPRF Volunteer!

The Fifth Annual LAUGH YOUR FACE OFF was held last Saturday in Chicago’s beautiful  Park West Performance Center and Concert Venue.  The 700 tickets sold out in only four days so LYFO may have to consider an even bigger venue for next year. The audience’s enthusiasm helped to make this year’s LAUGH YOUR FACE OFF a huge success.  The goal of LYFO has been to support the Facial Pain Research Foundation (FPRF) in their fight to find a cure for Trigeminal Neuralgia (TN).

Pat and Amy Tomasulo are the “founders” and “brains” behind the brilliant LAUGH YOUR FACE OFF annual fundraising event. Science researchers, TN sufferers, families and friends filled the audience along with  corporate sponsors. The evening began with cocktails, appetizers, the silent auction and the “great prizes raffle”! Over $10,000 worth of tickets were sold for the raffle!

The entertainment started with the fabulous crooning of John Vincent. Then the very funny Pat Tomasulo warmed up the audience with his great standup comedy.  After Pat got the crowd laughing we never stopped.  Calvin Evans, Chelsea Hood, Joe Kilgallon, Russ Williamson, and Ryan Dempster were the other outstanding comedians who took the stage.  They kept the audience laughing and got them “primed” to donate even more money to the silent auction and purchase more raffle tickets.  During the live donation event over $27,000 was raised in a matter of minutes from just the people in the Park West audience.

To date LAUGH YOUR FACE OFF has raised over 1.75 million dollars for research to find cures for the rare nerve disorder called Trigeminal Neuralgia.  The Foundation is currently funding seven different research programs to find the cures.  TN is known to be one of the most painful conditions known to humankind.  It is often called the suicide disease because in addition to the unbearable pain for many there is no known cause and no cure. 

During the evening several videos were shown to the audience. The first was about the research progress being made by the scientists toward finding the cures.  The second was about Cori Murdoch, a young woman FPRF Volunteer who died last year.

The video about Cori contained photographs showing how much she loved life.  It also showed how TN impacted her and her family when the TN pain returned after unsuccessful surgeries and treatments. This video and her parent’s presence in the audience explained the suffering of TN patients and gave everyone present a deeper understanding into the daily toll that TN takes on a person’s quality of life.  It was emotional, inspiring and heartbreaking. 

Carter & Cheryl Orlet

How Cheryl Orlet and Her Family Cope

With Trigeminal Neuralgia

By Kathleen Sweeney

Cheryl Orlet is an amazing mother of three, two boys and one girl, of which one of the boys and the girl are twins. Although she is a TN Warrior, as we call them, she still manages to attend almost all of their soccer and baseball games and competitions. Her daughter is a dancer and when she is competing Cheryl tries to fix her hair and her makeup but her hands shake too much to do it. Other mothers help out by telling her to sit down and let them get her ready. It is this kind of support that carries her through. “The noise at those competitions is just so loud! I sit there just trying to smile for her. I put on a brave face. I don’t want her to see how much pain I am in. I have amazing friends who help me out so much.” But she worries that her suffering is affecting their childhood. Her deepest concern is that she is somehow robbing them of the carefree years all children deserve. They worry that their mom isn’t feeling well and that they might be making too much noise or are disturbing her in some way, causing her pain to worsen.

It all started seven years ago in 2011. “I was having an ungodly amount of pain that I think I stayed awake with for four days straight … just crying.” She could not get relief. She went to the emergency room and they sent her to an ENT doctor who sent her to see her dentist. Everything came up clean there so they sent her to her primary physician. As she told him “… there is this invisible line drawn down the middle of my face. The right side is just – I’ve never ever felt pain like that before. Even after having gone through two C-sections and having root canals done, I’ve never been in so much pain.” He told her it sounded like Trigeminal Neuralgia and referred her to a neurologist who gave her so much medication that she couldn’t function … and he just kept upping it. So she quit him. She finally found one she really liked and he gave her trileptal, which has minimal side effects. She wasn’t as groggy and tired. It allowed her to function. As she says, “The most important part for me is, I can suffer …  and put up with a lot, but I hate anything that takes away from my kids.” She doesn’t want to miss out on anything that happens in their lives.

Cheryl is a registered nurse. “The absolute worst thing about this disease is that not a lot of people are educated on it. … When I was in nursing school we literally learned about it for five minutes. It was a paragraph in our book when we did the section on neurology.”

Whenever Cheryl has to go to the emergency room and tell them she has trigeminal neuralgia they tell her they can’t find it in their system so they put her under headache or migraine. “It’s not a migraine. It’s the most ungodly amount of pain you could ever imagine. Some of them look at you like you’re a drug seeker, just there to get a fix. I am there as a last resort!”  On one particular day there was nurse who saw her and said she had never heard of trigeminal neuralgia but had just had someone else come in with it. She said they were asking for dilaudid, an opioid, and she wondered if that was a reasonable request. Cheryl responded “This pain is real. It is real!” The nurse was just amazed that she had two patients there with TN and she had never heard of it before. It is in these situations that she tries to raise awareness. “It needs to be made more aware. I love raising awareness for it. I just hope some money starts going to it.”

After three years of living in pain she decided to try surgery. She told her husband “This is how bad this disease is. I am so desperate I am willing to go into brain surgery.” But she was excited because she thought this could be “it”! On September 15, 2014 she had micro vascular decompression surgery. They found that an artery had adhered itself to the nerve. The surgeon was able to scrape the artery off of the nerve and then he put a Teflon pad around the nerve so that another artery wouldn’t or couldn’t do the same thing. She was supposed to be there for three days but was actually in the hospital for 10 days overall (3 days in ICU) with complications.

Her children came to see her after her surgery and she was asleep when they arrived. She awoke hearing her daughter crying. She was staring at the staples in her mother’s bald head behind her right ear. She said “Mommy are you OK? Are you going to be alright?” Although they had talked about it beforehand you just can’t really prepare children for such a thing. Her oldest son didn’t know what to think about it so he wrote his story (his version of her story) for a school project, which helped him to cope. He won First Prize and his story will follow this one, for you to read. He was in fifth grade at the time.

When Cheryl got home from the hospital she had about three weeks of relief. “A little bit of relief” is how she describes it. She was highly medicated and recovery was “just awful. Every time I sat up I would throw up.” Her symptoms returned and at times she thinks her trigeminal neuralgia was worse since she had the surgery. When I asked if there were any benefits at all she responded “No.” She has Type II, which means the pain is constant. And at times it is even worse. Washing her hair, her face, combing her hair, drinking, sweating, all increase the pain. And then there’s all the medicine. She can’t eat yet it makes her gain weight. She hops on the treadmill to work out which starts her sweating and then the sweat rolls down her face.

She started taking trileptal in 2012 and it was new to her. She has had success with it but she also needs baclofen due to her inner ear pain. “The pain is just so deep. Right between my inner ear and the roof of my mouth.”

But again, what makes the pain that much worse is the way it affects her kids. They pick up on how bad she is hurting and it hurts her to know this. When it gets really bad her right eyelid swells shut. Her children will ask “Mom do you need me to get you a heat pack?” or “Can I get you something?” “Do you need anything?” The worst is when they are kids being kids. Her twins will be jumping around and all of the sudden they just stop and freeze. They turn and say “Oh mommy. Is this making your head hurt?” Or when her daughter who has asthma gets coughing hard and makes herself stop to apologize. “Mommy, I’m so sorry. Is this coughing hurting your head?” Cheryl tells her “You are a little girl with asthma. Don’t worry about me. I’m the mom. I need to be worrying about you. Don’t worry about anything you do. I’m worried about you.”

One day she passed out at work, the pain was so horrible. She collapsed and they sent her to the hospital. Her neurologist thought a University doctor might see something he didn’t or have some idea of something else that might work … just to get his opinion and see if there was anything they hadn’t tried. He was good (they said the best!) but when he saw her chart he told her she was on what she needed to be. That her best bet was pain management and since there is no cure so, basically, this is your life. Just go day by day with the pain management drugs. When she went back to her neurologist because she was having more symptoms she was told she was no longer a patient since she went to another doctor (whom he recommended). That was quite a surprise to her as she found herself without a neurologist to work with. He general doctor has since taken over and doses her trileptal. He works with her; he believes her pain and he has become a good friend. But she still can’t believe the other one just let her go after all they had been through together.

For Trigeminal Neuralgia Awareness Day on October 7, 2015, the Belleville News Democrat newspaper did a story on Cheryl. It is in a bigger town next to hers. She just really wants to raise awareness! She sells shirts with Trigeminal Neuralgia on them and donates the proceeds to the Facial Pain Research Foundation. She also wears them so people will ask her what it is so she can tell them about it and that she sells them to raise funds for research. She has had people stop and say to her “I have that too.” She loves to raise awareness of it.

Her husband has been a colossal help. She hasn’t done the laundry in at least six years because it is too painful to bend over. When he would have a headache or a toothache he would ask her “Babe, how do you do this every day?” Now he just asks it out of the blue. She says “You do what you have to. It affects every single day of your life. There’s just not a day without pain. It’s ‘How bad is it going to be today?’ ‘Is it a day I can even get out of bed?’ Or is it I’m going to be in the middle of doing stuff and I just have to get through that. Luckily I have an awesome support system. … I think if it wasn’t for my family there would be a lot more days in bed.”

Although Cheryl has tried acupuncture and a number of other things, people always seem to have some advice to give of some thing new she should try. She says she is scared to try anything because she doesn’t want it to get worse. She can’t imagine being in any more pain than she is in now and she is not willing to take that chance.

She worries that she is stealing her children’s childhood; that her pain is affecting them in some negative way. “You just try to be as happy as you can and not let your kids see the tears. They worry about me so much and I don’t want them to. I want them to just be happy kids and not tell their friends when they come over to not be too loud cause ‘I don’t want to hurt my mom’s head.’ I don’t want that. I don’t want them to look back on their childhood and say ‘my gosh, mom was sick all the time.’ She never used to miss anything but this past year has gotten so bad that she had to miss things. Her children say “I get it. I get it Mom.”

“Luckily I have a job where they are understanding. I’m an administrative nurse. I do scheduling and a lot of paperwork and just make sure that all goes well. I’ve been at my job for 20 years. I started in the kitchen and I worked my way up to Nursing Director. If it wasn’t for them I wouldn’t have a job. They know when I’m not feeling good. They’ll say ‘Go home! Go work from home.’ There are some days I can’t even sit upright in a chair.” When she thinks “I can’t do this anymore” she recalls how “I busted my ass to get through nursing school. It was HARD. I haven’t been doing all this work for Trigeminal Neuralgia to rob me of my medicine career. Something I’ve been wanting to do forever.”

When asked what she would say to someone who just had that jolt of pain for the first time she said first to find a medicine regimen that works for you. Don’t be afraid to stand up to your doctor. If you can’t find agreement with him or her find a new one. Definitely join a few support groups on Facebook. Get involved and raise awareness.

“By all means possible take the negative and turn it into a positive.”

Carter’s First Prize Story in Fifth Grade

            Webster's Dictionary defines "incurable" as "not likely to be changed" but my life and my family's life (especially my mom's life) has changed in so many ways in the last 5 years. My mom has a rare and incurable disease called trigeminal neuralgia and this is her fight and our family's journey.

This all started one morning when she woke up. When she woke up she had horrible facial pain. She tried taking medicine like ibuprofen and Tylenol but nothing helped. After a couple days she still had pain so my dad took her to the ER and the doctors just didn't know what to do. They decided it would be best for my dad to take her to the ear, nose, and throat doctor. I was very confused why they weren't just taking her to another hospital. During this time I was just ... confused. I barely knew what was going on and why she was having this pain. When she came home from the doctor they said that she needs to see her dentist.

That evening she got into the dentist. After examining her he determined that there was no problem with the gums or teeth that would cause her any pain. The dentist said that she just needed to go see her doctor. She has seen him for many years and she trusts him.

The next day my mom was able to get in to see him, my mom explained to him that she was in such bad pain she couldn't bear it. She described her pain to him and she said "if you drew a line down the center of my face, it's the entire right side of my face that is in horrible pain, especially the inner ear and the roof of my mouth". She then went on to tell him about how she couldn't sleep and walked around our house at night because she couldn't sleep because she was hurting so bad. He looked at her and said, "I'm afraid you have trigeminal neuralgia". They talked about different medicines she could take to reduce her symptoms, there is no cure for the disease but there are medications that can reduce some of the pain and other symptoms such as relaxing the nerve. He prescribed medicine for her that people with seizure disorders take. He told her that she should try to find a neurologist. Prior to her first visit with her new neurologist my mom was admitted to the hospital for some pain management. During her hospitalization, she was given steroids and pain medicine and she finally felt some relief.  She remained in the hospital for a few days and she was released with orders to see a neurologist.

Within the week my mom went to see what would be the first of 6 neurologists. All the different medicines he was trying with her made her very tired and it was hard for her to do anything and she slept most the time. Every time she told him that she was in pain he increased her medications. After going back and forth with that doctor many times and disagreeing about treatment my mom went to look for another doctor. The next doctor she saw suggested she have a treatment done called "gamma knife" this is a very precise radiation treatment that is focused on one small area. The doctor wanted to do this treatment to directly access the trigeminal nerve to attempt to numb the pain or at least decrease it. After a lot of testing they said she wasn't a candidate for the gamma knife treatment. It seemed like she would get so excited only to be disappointed, sometimes it was hard to see her so upset. This doctor referred my mom to another doctor across the river.

I remember my mom came home very upset from this appointment, the doctor was very short with her and would not listen to all of her symptoms. This doctor wouldn't give her time to tell her story and he pretty well just blew her off and wouldn't allow my mom the chance to speak. He did at least order an MRI to look for any abnormalities which came back

OK and that was frustrating also, she didn't want anything bad to show up but she did want some answers. So that was another doctor gone which left her with no doctor.

There were few other neurologists that she saw that were also one­appointment doctors. Even though all this was so frustrating she was always happy. Between Mid 2013 to August 2014 my mom was in the hospital about every other month. These times were the hardest and I would miss my mom so much. We would go to the hospital to visit and dad would say "I know this is hard guys but please don't cry in front of your mom it may upset your mom more" and when we got to the hospital we could tell mom was being strong even though I could tell she was in pain and was missing us. Mom would smile, hug us, and ask about our days and school and our activities. It was hard not to get sad or scared when I saw the IV's and monitors hooked up to her.

One good thing did come from all these times in the hospital, she found a really good neurologist and she really liked him. He helped her find new medications with few side effects which was good for us because she wasn't as tired and could do more stuff with us. After many more times in the hospital, he introduced my mom to a neurosurgeon he worked with. He was also very nice and wanted to help, the first time he met her he said, "don't cry I'm going to help you". My mom came home excited that she had found a doctor that would help. In august 2014, after being in the hospital again, she decided to go in and have brain surgery.

According to my mom what the doctor was going to do was to go into her skull and the brain and look at the nerves that come out of the spinal cord and look at the trigeminal nerve and see what was going on. The doctor would look and see if there was anything touching the nerve and if there was he would move it away so the nerve wouldn't be affected and that would hopefully stop all the pain.

The surgery was very scary for mom but just as scary for me and dad. Bradyn and Caitlyn were too young to understand. Just hearing brain surgery is scary, mom and dad tried to act like it wasn't a big deal. My mom was supposed to only be gone for three days. My brother, sister and I stayed at my grandma and grandpas house. They tried to keep things as normal as possible like there was nothing going on but we missed mom, dad, our pets and our home. Mom and dad ended up being gone for 10 days, we got to see her one time while she was at the hospital. We walked into her room and it was really scary for us, she was hooked up to all kinds of wires and tubes, they had shaved part of her hair off and there was a row of staples in her head. We were very nervous to go by the bed but so happy to see her. She was happy to see us but she was in a lot of pain. My mom's nurse and pain management doctor had heard so many stories about us that they had presents ready for us, they gave us a bag with candy and a book that had an invisible ink pen, her doctor made us balloons with smiley faces made out of the gloves that the doctors and nurses wear. I felt better about my mom being there after seeing how nice the people were that were caring for her.

When my mom came home she was having a very hard time, her pain was still very bad, she kept telling us that it was going to be okay because she was getting better. Mom spent about two weeks in bed before she could start moving around the house. It was so great having her home because even though she was in bed we could see her every day. So many people were helping us out, I couldn't believe all of the people coming by to bring us dinner and they always brought dessert too! Mom and I would watch movies in her room even when she was not feeling well, just had to make sure not to move the bed too much because it would hurt her head too much. It was a hard time but we were doing good because we were all together, we were just ready for her to feel better and get back to how she was four years ago.

I am sad to say that never happened, mom even says sometimes she thinks the surgery actually made it worse. My mom saw another neurosurgeon to see if anything else could be done and he told her there was no cure for this disease and she has a rare type of trigeminal neuralgia and all she can do is have help dealing with the pain.

My mom took this bad news and turned it into a good thing by teaching others about her disease. Last October the Belleville News Democrat put a story in their paper about my mom, they came to the house and talked to her and put it in the paper. Mom has also been raising money to give to the people that research cures. My mom makes me proud, it is hard seeing her in pain but no matter what is going on she is always there for me and my brother and sister.